National strategy launched in February 2009

In February 2009 the “National Dementia Strategy for England: Living well with dementia” was launched. The five-year plan was supported by an investment of GBP 150 million to support local services to deliver the strategy.

A revised implementation programme was published in 2010, when the new coalition government pledged to continue to implement the strategy. The Dementia Action Alliance (DAA) was also formed in 2010. The DAA, consisting of 50+ organisations, aims to ensure that the strategy is implemented.

Alzheimer Europe looks at Englands's national dementia plan, "Living well with dementia: A national strategy", which was launched in February 2009

Phil Hope

The English Health Secretary, Alan Johnson and Care Services Minister, Phil Hope, launched “Living well with dementia: A national dementia strategy” on 3 February 2009. This five-year plan aims to ensure “that significant improvements are made to dementia services across three key areas: improved awareness, earlier diagnosis and intervention, and a higher quality of care”. 17 key objectives have been identified and the government has pledged a further GBP 150 million to fund the implementation of the strategy. Having worked closely alongside the government to develop the strategy, the Alzheimer’s Society believes that it “will make an incredible difference to the lives of people with dementia and their carers”.

The “Vision”

The strategy’s authors give their vision for dementia services as “a system where all people with dementia have access to the care and support they need. It would be a system where the public and professionals alike are well informed; where the fear and stigma associated with dementia have been allayed; and where the false beliefs that dementia is a normal part of ageing and nothing can be done have been corrected. It would be a system where families affected by dementia know where to go for help, what services to expect, and where the quality of care is high and equal wherever they might live.”

Such aspirations, if realised, would make a huge difference for all those affected by dementia. However, Alan Johnson reminds us of the challenge when he says, “I don’t under-estimate the scale of the task ahead… It will require a great deal of work and commitment by those responsible for commissioning and providing services.”

The Strategy reflects the thoughts of many, having encompassed a comprehensive consultation process during which over 4000 people were heard at nearly 50 events and some 600 responses to the consultation document were considered. The authors of the strategy also had the benefit of the recommendations from the External Reference Group (chaired by Neil Hunt, Chief Executive of the Alzheimer’s Society) which were incorporated into the final document.

The Aims of the Strategy

First to be tackled is the lack of awareness and understanding about dementia itself and the issues which surround it as they create a significant barrier to diagnosis and the receipt of good-quality care. A person with dementia explains in the Strategy document, “It’s as though that’s it, you are dribbling and nodding, and that’s Alzheimer’s. That’s the picture of Alzheimer’s. But we are all sitting here talking perfectly normally. We have got Alzheimer’s of some form, but we are not nodding and dribbling”. Misconceptions such as this contribute to why people are waiting up to three years before reporting the symptoms of dementia to their doctor. Further barriers to early diagnosis were identified such as carers believing that the symptoms of dementia were “just a part of ageing”. Even if carers did suspect dementia, they would often prefer to be in denial. Add to these factors that only a third of English GPs questioned believed they had the necessary skills to diagnose and manage dementia, together with the fact that people over 65 are more worried about developing dementia than cancer, heart disease or stroke, it will come as little surprise that half of the public surveyed were found to believe that there is stigma attached to this disease. Removing such stigma is, as Alan Johnson explains, crucial, because “dementia is not a natural consequence of ageing and it is not true that nothing can be done for people with the condition. In reality, a great deal can be done to help people overcome the problems of dementia, to prevent crises and to improve the quality of life for all involved”.

Experiences highlighted in the English strategy, such as “I’ve just been told “you’ve got Alzheimer’s and they walk out; (it) is absolutely bloody disgusting”, will hopefully be avoided if the second aim of the Strategy, early diagnosis and support, is realised. Various initiatives are proposed to achieve early diagnosis including the creation of memory services, which will be staffed by specialists who will “sensitively” communicate the diagnosis and provide good quality information and advice. Early support could be enhanced by a “dementia adviser” peer support networks and a possibility to be actively involved in the creation of local services: All of these are envisaged within the strategy.

The practical initiatives which can be employed throughout the community, hospitals, care homes and during end-of-life care are the focus of the strategy’s third aim of living well with dementia. Recognition of the huge contribution carers make by the implementation of a “New Deal for Carers” would see an assessment of carers’ needs being made and enable the provision of better support as well as the allocation of carers’ breaks. To facilitate independence for people with dementia, housing support and telecare initiatives are highlighted. The improvement of dementia care in care homes is envisaged by a senior member of staff taking the lead to ensure that there is a clear line of responsibility and accountability. However, there have been calls for other incentives to be offered to care homes such as pay awards of the possibility of being awarded a nationally recognised dementia care qualification. Another issue addressed is the misuse of medication for people with dementia in various forms of institutionalised care, with the strategy listing ways in which the over-use of medication can be reduced.

Implementation of the Strategy

To ensure successful implementation, the strategy has placed great emphasis on the need for training and workforce development as well as the establishment of local commissioning and planning mechanisms. Stands of health and care services will be monitored by the Care Quality Commission (CQC) which will inspect and assess for quality across health and social care services, primary and secondary care.

Heeding the calls made during the consultation process to build up the research base in dementia for prevention, cause, cure and care, the strategy lists actions already taken and states that a “clear picture of research evidence and needs” should be established. Amongst others, Rebecca Wood, Chief Executive of the Alzheimer’s Research Trust, believes that research has not be emphasised enough as “the Strategy has failed to include any new pledge on dementia research, which receives just 2.5% of the medical research budget.” Perhaps further attention will be drawn to this at the recently announced Parliamentary debate of the Strategy.

Decisions will be taken at local level regarding funding of individual projects and the pace of implementation will vary according to local circumstances. Nevertheless, it is clear from objectives 13 to 17 that all actors, whether at national, regional or local levels are expected to work together to ensure implementation. Indeed, whilst joint leads of the Strategy, Sube Banerjee and Jenny Owen recognise that “we have a unique opportunity to make a true difference for those affected by dementia” they acknowledge that this will not be a simple process as “success will require true joint planning and joint working between health and social care commissioners and providers, the third and independent sectors and people with dementia and their carers. It will require flexible and imaginative leadership at all levels along with constant vigilance and scrutiny if the deliver of the Strategy is to be kept on track. It will require commitment over time and ambition in the face of the true scale of the challenge.”

The very fact that England now has a national dementia strategy has been warmly welcomed. Reflecting the thoughts of many, Maurice O’Connell, Chairman of Alzheimer Europe, said, “I am delighted for the 570,000 people living with dementia in England, as well as their carers, that this long-awaited Strategy will now be implemented and that England joins Norway, France and Scotland in giving dementia the priority it deserves. I hope that other national European policy-makers take heed and implement their own national dementia strategies.”

Neil Hunt, Chief Executive of the Alzheimer's Society, explains how the Dementia Strategy developed, what he hopes to see in it and the challenges which lie ahead.

People in the dementia community have been campaigning for decades to get dementia on the public and political agenda. Sometimes after going to meet politicians or talking on the radio you ask yourself, “Are we getting our message through?” Last year, after developing evidence about the impact of dementia, lobbying and public campaigning in England, we found that all the effort had indeed paid off.

In August last year following discussions with the Alzheimer’s Society, our Government Minister with responsibility for dementia, Mr Ivan Lewis, committed to developing a National Dementia Strategy for England. He said he wanted to see a transformation plan for dementia services that would tackle public and professional awareness, early diagnosis and intervention and improving quality of care. We were delighted and have been working with the Government since then to make it a reality.

How did this happen?

A number of factors were key, but central to achieving the political commitment were a.) getting the evidence to put our case intelligently,

and b.) an assertive campaign of public and political work to raise the profile of dementia and the need for a national plan:

We gathered the evidence about the scale of dementia, the numbers of people affected and the financial cost. This was put to the politicians and wider public.

We worked with other bodies and most influentially the National Audit Office (which is a body that monitors Government expenditure) and politicians on an influential parliamentary committee to make the case and ask the Government for action.

We galvanised our local and national network of volunteers to continue challenging public and political audiences to do more. In particular we took the UK medicine body which decides whether people can have publicly funded medication to Court to challenge their decision to restrict access to drug treatments.

All of these factors were key in driving dementia up the political agenda AND when the time came, we had a politician who was willing to act and show leadership on our cause.

What happened after the announcement?

The Government Health Minister Ivan Lewis put Professor Sube Banerjee, a specialist in old age psychiatry and Jenny Owen a Director of adult social services in charge of writing a strategy. In addition he asked me as Chief Executive of the Alzheimer’s Society to put together an external reference group of people with dementia, carers, and organisations who all have an interest in improving life for people affected by dementia to set out the priorities for action.

The external reference group was an invigorating group of people passionate about dementia. All discussions included people with dementia and carers, including people who many of you will have come across like Barbara Pointon and Peter Ashley who are quoted here separately.

The group reported our findings back to the Department of Health and we asked for a radical but achievable plan of action which would significantly change quality of life for people with dementia and their carers. Specifically:

A programme of activity to improve public and professional understanding about the symptoms of dementia, the importance of getting a diagnosis and what help is available. We also said that public campaigns about stigma need to reduce the fear and stigma that people feel.

Getting services in place to diagnose dementia early and accurately and then having information and help available to help people through their journey.

Making sure that people who work with people with dementia have the attitudes, knowledge and skills to be in a position to provide high quality care. This needs to happen whether someone is in their own home, or in a hospital, or in a care home.

What happens next?

In June the Government will publish a draft strategy and the Society will respond. In doing so we will draw on the views and experience of people with dementia and their families. We are very conscious that opportunities like this one do not come often and we need to make the most of it.

What will the challenges be?

The real challenge will be getting the leadership, commitment and money in place to make the Strategy happen and lead to real changes for people with dementia. It is no good having a great plan if no one does anything about it.

The Alzheimer’s Society in England will be looking at what we can do as a service provider to support the delivery of the Strategy for people with dementia. We will also continue to raise the political pressure and public awareness that are needed to keep dementia high on the agenda for the health service, social care, politicians and the public.

Conclusion

We need dementia to rise to the top of the public and political priority list. Dementia needs to be considered as important as cancer or heart disease.

The National Dementia Strategy for England will be a significant step forward in that journey. The challenge will be to ensure that a good plan delivers substantial change. I hope that the priority that dementia is being given in the UK to this work will help other nations to achieve the same level of commitment and progress.

Professor Alistair Burns, Director for England's dementia strategy, speaks with Alzheimer Europe about the key priorities ahead and the involvement of carers and people with dementia in the implementation of the strategy.

Alzheimer Europe (AE): Professor Burns, you were appointed as the Director for the English dementia strategy in January this year. What have your key priorities been and what will be the key challenges ahead?

Alistair Burns (AB): The priorities for dementia care in England have been well described in our re- cent Outcomes Focused Implementation Plan. For the next year we have four particular priorities, not to the exclusion of other things, but areas where we think we can make a significant difference quickly to the lives of people with dementia and their carers.

• First, encouraging early diagnosis and interven- tion with support in Primary Care as we know that two thirds of people with dementia never receive a diagnosis.

• Second, care of people with dementia in the gen- eral hospital. We know that care can be improved greatly for people with dementia in this setting and not only that, there is evidence that length of stay in the general hospital for people with dementia can be reduced by improving care.

• Third, care of people with dementia in nursing and residential Homes. A high proportion of people with dementia are in care and, in some Nursing Homes, the majority of residents suffer from dementia. We know that training and edu- cation have a key role to play in the care of people with dementia in homes where many of the care staff do not have professional qualifications.

• Fourth, reduction in the use of antipsychotic drugs for people with dementia. In the UK there are an estimated 180,000 people with dementia being prescribed an antipsychotic drugs and estimates have been given that there is an excess of some 1,800 deaths per year as a result of their prescription. It is our priority to reduce the level of prescribing by two thirds within two years of a baseline audit (i.e. by November 2011).

Central to each of these areas is continued support and care for the carers of people with dementia – that is so important and it underpins everything else. We have a number of developments in services for people with dementia in England which sup- port these initiatives. First, the NICE Quality Standards were published in June 2010 and detail 10 standards which, if adhered to, would become the marker of a good service for a person with dementia. These cover the whole pathway of a person with dementia right from early diagnosis through care at home, care in the hospital, admission to Nursing or Residential Homes and end of life care. It underscores the importance of educa- tion and training and increased awareness of the challenges of people with dementia and the need to support their carers.

AE: People with dementia and carers were actively involved in the development of the Eng- lish dementia strategy. How do you see their continued involvement during the implementation of the strategy?

AB: People with dementia and their carers were intimately involved in the creation of the National Dementia Strategy. This is important because it is people with dementia and their carers who are uniquely placed to know and understand the major problems faced in everyday life and what the solutions are. A strategy will only be sustain- able in the long-term if it is in accord with the needs of people with dementia and their carers.

The issues facing people with dementia and their carers remain stark and in the climate of challenging financial times, it is important that we focus on the need to align and join up Health and Social Care services. In the UK, £8.2 billion is spent on the care of people with dementia and there is no doubt that considerable efficiencies can be made in terms of economies of scale and avoidance of duplication of effort with the pros- pect of reinvestment in services for people with dementia.

AE: France, Norway, the Netherlands and Scot- land also have established dementia or Alzheimer plans and other countries are in the process of developing their own strategies. Is there a role for greater European collaboration on this issue and do you envisage to exchange experiences and best practices with your colleagues from other countries?

AB: There are undoubtedly synergies which can accrue from working across various centres and I think people in different countries have much to learn from others in terms of the priorities and challenges around dementia care.

This article first appeared in Dementia in Europe magazine, issue 7, March 2011.

In February 2012, David Cameron launched the "Prime Minister’s Challenge on dementia", which superseded the National Dementia Strategy. The new initiative focused on three key areas, aiming to drive up the quality of care and help to reduce future pressures on the NHS and social care.

Driving improvements in health and care

This part of the initiative aimed to increase dementia diagnoses and improve care in hospitals, but also to improve standards in care homes. In addition, the plan called for better information for people with dementia and their carers and also better support for carers.

Creating dementia friendly communities that understand how to help

Lack of awareness among the public and poor understanding in communities has a major impact on the experience of people with dementia. This item called for people living with dementia to be able to say that they know what they can do to help themselves and who else can help them and also to show that their community is working to help them to live well with dementia.

Better research

While the UK is considered one of the top five countries for dementia research, this item aimed to continue making significant progress towards prevention, treatment and cure in the UK, including more direct involvement of people with dementia.

The initial challenge was launched in February 2012 and was followed up by updates in November 2012, May 2013 and May 2014. All of these are available for download below.

18 June 2014: All-Party Parliamentary Group on Dementia calls for new long-term National Dementia Strategy in UK

The All-Party Parliamentary Group on Dementia (APPG), a UK cross-party group made up of MPs and Peers with an interest in dementia, published a report “Building on the National Dementia Strategy: Change, progress and priorities” on 18 June.

The report, released to coincide with the first legacy G7 event on dementia, explores work done in the UK to improve diagnosis and post-diagnostic support, commissioning of services and ensuring a skilled dementia workforce.

Based on its findings the APPG, together with Alzheimer's Society, calls for an “urgently needed” long-term national plan for dementia.